Patients with rare cancers often face additional diagnostic and therapeutic challenges. At Cancer Center Amsterdam, 10 rare cancer expertise centers have been accredited by the Ministry of Health, Welfare and Sport to provide specialized care and perform research to develop more effective therapies for these patients.

Approximately 130,000 people living in the Netherlands have tumor types that are classified as ‘rare’. Rare cancers are often difficult to diagnose and treat, and survival for patients with a rare form of cancer is significantly lower than for patients with a non-rare form. In addition, less research is performed on rare cancers meaning slower progress in finding new treatment options.

“It is our aim to also break taboos”

The Patient Platform for Rare Cancers (Zeldzame Kankers) is organizing a national awareness week to highlight the specific challenges patients with rare cancers are facing. The Patient Platform for Rare Cancers is a Dutch advocacy and patient participation organization formed in 2019. Their mission is to provide recognition and support for patients with rare cancers, and to increase the attention and the visibility of these diseases, some of which can carry social stigma. They also provide reliable information about the diagnostic process, which hospital specializes in types of rare cancer, where to get appropriate psychosocial help, and any ongoing (international) trials.

Rare cancer expertise at Amsterdam UMC

In 2021, the Ministry of Health, Welfare and Sport recognized or re-certified 38 rare disease expertise centers at Amsterdam UMC, 10 of which are within the oncology domain. The accreditation acknowledges these centers are the only, or one of only a few places in the Netherlands, that can treat these particular tumor types.

The expertise centers of Cancer Center Amsterdam have a high concentration of specialized knowledge and resources. Multi-disciplinary teams with medical specialists provide comprehensive and compassionate care. Importantly, the centralization of patients with specific rare tumors also accelerates research and therapy developments. In a series of articles over the upcoming months, Cancer Center Amsterdam will highlight each of these accredited expertise centers.

Cancer Center Amsterdam – Expertise Centers Rare Cancers and contacts

  • Bone Sarcomas, Dr. Jos Bramer, Orthopedic Surgeon
  • Heriditary Cancer, Prof. Hans Meij, Head of the Department of Human Genetics
  • Hematological Malignancies, Prof. Sonja Zweegman, Head of the Department of Hematology
  • Brain tumors, Prof. Philip de Witt Hamer, Neurosurgeon
  • Upper Urinary Tract Tumors, Dr. Joyce Baard, Urologist
  • Head and Neck Tumors, Prof. René Leemans, Head of the Department of Otorhinolaryngology (ENT)
  • Retinoblastoma, Prof. Annette Moll, Ophthalmologist
  • Rare Gastrointestinal Tumors, Dr. Heinz-Josef Klumpen, Medical Oncologist
  • Endocrine and Neuroendocrine Tumors, Prof. Els Nieveen van Dijkum, Surgeon

  • Gynecological Oncology, Dr. Ming Tjiong, Gynecologist

    [In collaboration with other medical centers, AvL-NKI]

Awareness activities

From March 7 to 13, the Patient Platform for Rare Cancers and other organizations will highlight the stories of patients with rare cancers on their websites and social media.

Follow the Patient Platform for Rare Cancers on Facebook, twitter, Instagram and Linkedin.

In this video with Dr. Joyce Baard of Amsterdam UMC, the (inter)national and regional role of these rare cancer expertise centers is highlighted. You are also invited to watch other videos and read the personal stories to increase your awareness and understanding of the special needs and challenges that come with having a form of rare cancer. Each day will spotlight a new story. The rare cancers that will be highlighted this year are: urachus cancer, sarcomas, vulvar cancer, primary tumor unknown, sebaceous gland cancer, eye cancer and penile cancer.

For more information: see The Patient Platform for Rare Cancers (Zeldzame Kankers), or contact Cancer Center Amsterdam [cca@amsterdamumc.nl].

Text by Laura Roy and Henri van de Vrugt